My devotional today included Psalm 42:1. It says, "As the deer pants for streams of water, so my soul pants for you, O God." I never used to fully understand that, but this long ordeal our family has been through has clearly shown me the meaning. My Uncle Abe (a man after God's heart for sure!) used to speak of how he wanted to go home to be with the Lord. I would think to myself about how could he say that; why was he rushing to leave life. The older I get, the more I understand what he meant. It is not that you are rushing away from this life, rather that your soul is panting for God. The desire to be with Him grows stronger and stronger, your thirst for Him is grows and grows. This life is fine, I am not looking to end my time on earth, but I sure do desire the day when I can go to meet Him in heaven.
I will add a bit more to Len's story this morning, as many have asked me to do so. My thoughts are a bit rambly, so I will not be doing anything in chronological order. During his ICU stay so many things happened that it is hard to put them in order. I cannot do justice to all that happened.
One visit we went in to his room and noticed that he had a large red patch on his side. We mentioned it to the nurse and she said she had seen it and wasn't sure what it was. The doctor later said he believed it was cellulitis and that the antibiotics would treat it. On the next visit, the patch had grown in size and he had a rash on his neck and chest. This trend continued for several visits. Last visiting hours were 9:00 p.m. and we kissed his hand (the only thing we could reach because of all the tubes, wires, and the special bed he was in) and said goodbye for the night. The next morning at 9:15 a.m. visit we were shocked at his appearance when we entered his room. He was swollen unbelievably, covered in a scarlet rash and his skin was leaking serum from being so swollen. The rash was literally everywhere, even inside his ears! The nurse told us that he was having a bad reaction to one of the antibiotics. This was the first time of this happening but would not be the last. Antibiotics were changed and reaction after reaction occurred. A specialist was eventually called in to find an antibiotic that would work and that he could tolerate. For the remainder of Len's life, Matt and I were adamant that she be consulted any time IV antibiotics were to be given.
During this period of time, kidney failure had started and was progressing. A nephrologist (kidney specialist) was called in on the case and he told me that we were looking at dialysis at some point. Many had asked what they could do to help and here was where help was needed. I asked them to pray, to put him on any and every prayer list, and to spread the word for prayer any way they wished. I also asked them to be specific in petitioning God. So many answered this call to prayer that I was in amazement! And I am sure there were many more that I do not know about. One morning I entered ICU and was greeted by his nephrologist, who told me that we were at dialysis point within the next 1-2 days. My mother had suffered through dialysis before dying and I so badly did not want Len to have to go through that, even if he was comatose. More prayer. The next morning, the kidney doc was shocked and amazed to find that Len's kidney studies had actually improved instead of continuing the downslide. I smiled my first true smile in days because I knew the Master Physician had intervened. Praises went up and prayer for continued healing was petitioned.
In the first several weeks of the coma, his kidneys were "insulted", he reacted horribly to several antibiotics, he could not be moved around because his blood pressure and his oxygen levels would drop to the pits, his skin popped from the swelling, the opened wound on his abdomen leaked massive amounts of fluid, and his mouth developed huge sores that turned blackish in color. One day we went in to see him and one of our least favorite nurses of the bunch was taking care of him. She only shared minimal information and being a nurse, I always wanted numbers and details. Getting info from her was like pulling teeth on a camel. We were glad for shift change because one of our favorite nurses came on to care for him. When we came in to the room, she greeted us and gave us an update. She began talking about what had happened right before shift change before night shift and day shift the previous morning about something "falling off" and I had to stop her and tell her we had NO clue what she was talking about. She looked shocked and asked us if ______ day shift nurse had not told us about it. Well, she hadn't and had left that unpleasant task to the next shift. Apparently they noticed fluid leaking on the bed under him and took the risk of tilting him so they could see what was going on. To my horror, I discovered that his behind had literally fallen off!! He had a bed sore that was deep and so massive that his entire coccyx bone was showing and the wound was about a foot and a half by a foot and a half in measurement. I heard all this, but having never seen one this bad I could not even begin to imagine what it looked like.
I will stop here but believe me, there is way more to come. There would be several bouts of kidney failure, more antibiotic reactions (some of which the doctors told me would have killed him if he wasn't on the ventilator because of the swelling in his neck, mouth, and throat), and that bed wound would become a nightmare beyond belief for the rest of his days.
Tuesday, June 10, 2014
Monday, June 2, 2014
The Saga Continues
I am feeling brave and less weepy today, so I will continue the story of our little family. After Len was placed in ICU on the ventilator, he seemed a bit better but still in a coma. On Sunday I told Matt to head on back to university because I felt sure the antibiotics would take care of things and his dad would soon be well. Was I so exhausted that I couldn't see the truth or was I just blinding myself to the truth?? He WAS NOT getting well soon and would undergo several weeks in a coma and wake to a physical nightmare later.
Matt returned to school and on Monday when I went for the first visitation hours of ICU, the nurse was waiting for me in Len's room. He was on 3 antibiotics, multiple drips for blood pressure and irregular heartbeat and others. He was swollen, pale, still, and they were giving him something to keep him in the coma because he had developed encephalopathy (brain irritation is the best I can describe). It finally sunk in just how bad the outlook was and I began to weep and told the nurse that my son was in Middle Tennessee about 1.5 hours away. I asked her to let me know if I needed to call him to return. She very quietly told me that I needed to call him and tell him to come now, not to wait till afternoon. I will say that the phone call to Matt was one of the hardest I have ever made. Family was called and they and many friends arrived to pray and say a possible goodbye.
I wish I could say I handled this all with grace and dignity, but the truth is that I wept and begged God for his life. I know we all face a day when a loved one passes on, but I just COULD NOT bear it to be him, not my best friend, my wonderful husband, my companion in all things. I covered his hand with mine and begged him to hear me and not leave me. I cried a river of tears, bargained with God, and prayed. There came a point where calm settled on me and I remembered the king in the Old Testament that was ill and dying and he turned his face to the wall and prayed. God healed him and gave him 15 more years. SO I turned my face to the wall at the head of Len's bed and asked God for the same thing. I felt a sweet peace descend on me and I knew that no matter what the answer was that God was with us and would not forsake us.
Matt arrived in time for the next visitation (that hospital is quite strict about the visiting hours in ICU) and we entered to find that a new cascade of events was taking place. Blood pressure support medications were at high drip rates, his kidneys were failing, and the surgical wound on his abdomen had to be opened and was pouring fluid out. We cried and held on to each other and slowly family and friends silently slipped in to say goodbye and pray. I remember begging him to wake up and tell me "I love you" one more time, but of course I knew he could not and would not at that time.
To the surprise of the entire staff, Len made it through the afternoon, then the evening, and finally through a long, tension-laden night. His temperature spiked to 104-105 degrees and he was placed under a cooling ice blanket. He remained there with only brief breaks for skin care reasons and each time his temperature would soar again. Yet he still hung on to the scrap of life in him! Visits were agony because each time we entered his room another bad event had occurred. I refused to move from the ICU lounge to even go to the cafeteria and my wonderful son, along with many caring friends, made sure I ate something and stayed hydrated. Matt and I were at the doors of ICU watching the clock tick the last minutes until the doors would open for visitation. Little did we realize that this would be the pattern for the next 2 months.
I will close with that and continue as I am able. Many things occurred the next days and months - it would take a book to tell them all. Many were bad, many were good, many just left us stunned. Most of all, the events left us totally dependent on God and grateful for His loving presence and provision.
Matt returned to school and on Monday when I went for the first visitation hours of ICU, the nurse was waiting for me in Len's room. He was on 3 antibiotics, multiple drips for blood pressure and irregular heartbeat and others. He was swollen, pale, still, and they were giving him something to keep him in the coma because he had developed encephalopathy (brain irritation is the best I can describe). It finally sunk in just how bad the outlook was and I began to weep and told the nurse that my son was in Middle Tennessee about 1.5 hours away. I asked her to let me know if I needed to call him to return. She very quietly told me that I needed to call him and tell him to come now, not to wait till afternoon. I will say that the phone call to Matt was one of the hardest I have ever made. Family was called and they and many friends arrived to pray and say a possible goodbye.
I wish I could say I handled this all with grace and dignity, but the truth is that I wept and begged God for his life. I know we all face a day when a loved one passes on, but I just COULD NOT bear it to be him, not my best friend, my wonderful husband, my companion in all things. I covered his hand with mine and begged him to hear me and not leave me. I cried a river of tears, bargained with God, and prayed. There came a point where calm settled on me and I remembered the king in the Old Testament that was ill and dying and he turned his face to the wall and prayed. God healed him and gave him 15 more years. SO I turned my face to the wall at the head of Len's bed and asked God for the same thing. I felt a sweet peace descend on me and I knew that no matter what the answer was that God was with us and would not forsake us.
Matt arrived in time for the next visitation (that hospital is quite strict about the visiting hours in ICU) and we entered to find that a new cascade of events was taking place. Blood pressure support medications were at high drip rates, his kidneys were failing, and the surgical wound on his abdomen had to be opened and was pouring fluid out. We cried and held on to each other and slowly family and friends silently slipped in to say goodbye and pray. I remember begging him to wake up and tell me "I love you" one more time, but of course I knew he could not and would not at that time.
To the surprise of the entire staff, Len made it through the afternoon, then the evening, and finally through a long, tension-laden night. His temperature spiked to 104-105 degrees and he was placed under a cooling ice blanket. He remained there with only brief breaks for skin care reasons and each time his temperature would soar again. Yet he still hung on to the scrap of life in him! Visits were agony because each time we entered his room another bad event had occurred. I refused to move from the ICU lounge to even go to the cafeteria and my wonderful son, along with many caring friends, made sure I ate something and stayed hydrated. Matt and I were at the doors of ICU watching the clock tick the last minutes until the doors would open for visitation. Little did we realize that this would be the pattern for the next 2 months.
I will close with that and continue as I am able. Many things occurred the next days and months - it would take a book to tell them all. Many were bad, many were good, many just left us stunned. Most of all, the events left us totally dependent on God and grateful for His loving presence and provision.
Wednesday, May 28, 2014
A Long 2 Years
I started my blog with the intention of faithfully keeping it current, but then life just exploded. 'So many things have changed over the past few years that even now I can hardly grasp what has happened to my little family. Hopefully over the next posts I can share and begin to deal with all that has happened. I feel it is important to share what we have experienced- maybe it can help someone else as they navigate the murky waters of healthcare.
In some of my last posts, I recounted how in 2010 that both Len and I had a reoccurrence of cancer. That seemed awfully tough at the time, but little did I know that worse was even to come! In 2011 Len was yet again diagnosed with cancer... colon cancer yet again. He was tested to see if it was genetic and thankfully it was not (we have a son and were concerned about his odds of this occurring to him). He underwent his 3rd colon cancer surgery and were told that he was once again all clear. That was a good report for certain because they discovered that the cancer cells were the type that did not respond to chemo. Makes me wonder now if the first 2 times of surgery/chemo that it was the same way and the horrible chemo experience for him didn't really need to occur. Well, we will never know and I try not to dwell on that.
At the beginning of 2012 Len underwent his follow-up colonoscopy and to our horror we discovered that the cancer had returned. This time we knew the surgery would involve having a permanent ileostomy (bowel routed to outside to drain into a bag attached to his abdomen), Len was very concerned by this but I just kept reassuring him that it would be okay and that I would help deal with it. He had his surgery March 1st and all seemed to go well. The surgeon assured us that the surgery had gone smoothly and despite finding a tumor outside the bowel, he felt he had got all the cancer out. The first day he slept a lot but was more awake the next day. The days following were NOT so good at all. He progressively became "sleepier and sleepier", would not eat or drink, and was lethargic. I told every doctor and every nurse and every PERSON that stepped into his room that something was wrong, that he normally bounced back rapidly from surgery. They all reassured me that it was normal after a "big surgery" like he had done. A little over a week later, I found out in a hard way that this was NOT true.
About 8 days after surgery, I walked into his hospital room to find him totally non-responsive, ashen-colored, and his oxygen saturations were in the 40's. The alarm on his monitor was ringing continuously but NOBODY was responding to it. I ran into the hallways and yelled for help. His nurse finally came and then called for respiratory therapy to come. Nothing they did helped. I asked her if he was in a coma and she replied, "No, why would you ask that?" Well.... uh, he is nonresponsive, his breathing had changed and he had no spontaneous movement at all. Eventually a doctor was summoned and he told us that he WAS comatose and that he must be moved to ICU immediately and put on a ventilator. They rushed him to ICU, put a tube down his throat to his lungs, and put him on the ventilator. His blood pressure was low so they had to start medicine drips to help keep it up enough to circulate blood to vital organs. He was diagnosed with Massive Overwhelming Sepsis (severe infection in blood stream) and it was causing his body to shut down. Several IV antibiotics were started and I breathed a sigh of relief, believing that these would soon take care of the problem and he would be fine. NOPE, it was the continuation of a nightmare for us and him. What followed was an ordeal of a broken body, medical errors, happenstance, and horror. I will delve into those things here in future posts.
In some of my last posts, I recounted how in 2010 that both Len and I had a reoccurrence of cancer. That seemed awfully tough at the time, but little did I know that worse was even to come! In 2011 Len was yet again diagnosed with cancer... colon cancer yet again. He was tested to see if it was genetic and thankfully it was not (we have a son and were concerned about his odds of this occurring to him). He underwent his 3rd colon cancer surgery and were told that he was once again all clear. That was a good report for certain because they discovered that the cancer cells were the type that did not respond to chemo. Makes me wonder now if the first 2 times of surgery/chemo that it was the same way and the horrible chemo experience for him didn't really need to occur. Well, we will never know and I try not to dwell on that.
At the beginning of 2012 Len underwent his follow-up colonoscopy and to our horror we discovered that the cancer had returned. This time we knew the surgery would involve having a permanent ileostomy (bowel routed to outside to drain into a bag attached to his abdomen), Len was very concerned by this but I just kept reassuring him that it would be okay and that I would help deal with it. He had his surgery March 1st and all seemed to go well. The surgeon assured us that the surgery had gone smoothly and despite finding a tumor outside the bowel, he felt he had got all the cancer out. The first day he slept a lot but was more awake the next day. The days following were NOT so good at all. He progressively became "sleepier and sleepier", would not eat or drink, and was lethargic. I told every doctor and every nurse and every PERSON that stepped into his room that something was wrong, that he normally bounced back rapidly from surgery. They all reassured me that it was normal after a "big surgery" like he had done. A little over a week later, I found out in a hard way that this was NOT true.
About 8 days after surgery, I walked into his hospital room to find him totally non-responsive, ashen-colored, and his oxygen saturations were in the 40's. The alarm on his monitor was ringing continuously but NOBODY was responding to it. I ran into the hallways and yelled for help. His nurse finally came and then called for respiratory therapy to come. Nothing they did helped. I asked her if he was in a coma and she replied, "No, why would you ask that?" Well.... uh, he is nonresponsive, his breathing had changed and he had no spontaneous movement at all. Eventually a doctor was summoned and he told us that he WAS comatose and that he must be moved to ICU immediately and put on a ventilator. They rushed him to ICU, put a tube down his throat to his lungs, and put him on the ventilator. His blood pressure was low so they had to start medicine drips to help keep it up enough to circulate blood to vital organs. He was diagnosed with Massive Overwhelming Sepsis (severe infection in blood stream) and it was causing his body to shut down. Several IV antibiotics were started and I breathed a sigh of relief, believing that these would soon take care of the problem and he would be fine. NOPE, it was the continuation of a nightmare for us and him. What followed was an ordeal of a broken body, medical errors, happenstance, and horror. I will delve into those things here in future posts.
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